Caregivers' perspectives on future planning for their adult children with intellectual disabilities in Romania

Abstract

Background: Much of the research and program innovation regarding future planning for adults with intellectual disabilities has occurred in countries with well-developed disability service systems. This study explored how family caregivers planned for their adult children's future caregiving needs in Romania, a country with a limited array of disability services. Method: In this exploratory qualitative study, we conducted 30 face-to-face interviews with caregivers of adults with intellectual disabilities in Romania. We used thematic analysis to analyse the transcribed and translated interview data. Results: The majority of participants, while believing that future planning was necessary, had not engaged in planning and had no supports for planning. As there were few disability services, the majority of the participants reported that they could not engage in planning, and many avoided thinking about the future. Conclusion: Romania and other countries with fewer disability services likely need alternative models of future planning than those that have been developed and tested previously.